April 08, 2010
Update from the Doctor Appointment
Tuesday, April 6th, we met with Dr. Taylor, Lindsey's oncologist. We (Dr. Taylor, Bob, Bob's dad, and myself) jointly decided that the best next step is to focus on Lindsey's quality of life. The combination of meds affected her in a way that created significant challenges for everyone involved. Since stopping a combination of medications on March 28, which included the chemotherapy, some of the behavior issues have stopped. Life has become more "normal" and we have not had any occurrences of significant anger, tantrums, or defiance.
We're learning a lot through this journey. Our perceptions of practices utilized are changing. One of those perceptions is Hospice. We have historically thought of Hospice as an organization that is engaged when an individual is quickly approaching the end of life. That perception was wrong. The organization really focuses on both hospice and palliative care, which means that patients can have the expertise of their staff and individualized care at any point during a serious illness. The organization can do many things to maximize the comfort of the patient AND the family. Palliative care can begin at any stage of a serious illness, is available for patients while they receive or seek treatment, and it is often provided earlier depending on the patients needs. Hospice is a special type of palliative care for people who have life-limiting illnesses and who are focused on comfort, rather than a cure. At the beginning of round two of Lindsey's illness, Dr. Taylor indicated that with Lindsey's high-grade Glioma tumor we may have 6 months with Lindsey if we opt for no treatment. Pursuing treatment may extend life to a year. We will cherish every moment we have and continue to pray for a miracle.
Hospice is now working with us. Registration occurred Tuesday night. The first visit with a Hospice nurse will occur today.
We are seeing signs of our previous Lindsey. For the first time in 4 weeks she actually watched an entire episode of The Survivor, one of her favorite shows. She had a great day with her other "mom", Aunt Nancy as they spent the day together. I love this photo of Nancy and Lindsey. God has given us a great family and a group of friends that have been incredible support through this journey. We are thankful and truly blessed.